Parenting a child or young person with chronic pain

Family

Chronic pain affects everyone in the family, not just the child or young person who has the pain. Chronic pain disrupts family activities and everyday routine and can lead to emotional and financial strain.

Tips1. DO try to keep the whole family in the loop about what is going on. For example, you could take brothers and

sisters along to a routine hospital appointment.2. DO speak to other parents in the same situation.3. DO try to keep a sense of humour and have fun as much as possible.4. DO NOT overprotect your child with chronic pain. Encourage them to participate in activities.5. DO NOT focus too much of your attention on your child with pain at the expense of their brothers and sisters.

Support for parents and familiesPain Concern’s helpline volunteers have been trained to give information and support to parents with children living in pain. Call 0300 123 0789 or email help@painconcern.org.uk.

Many parents we spoke to valued sharing experiences with other families. You could try

• Attending sessions at pain management programmes for families to meet others in the same situation

• Finding a local support group for people in pain. Most groups welcome carers

• Using Contact a Family (makingcontact.org) to get in touch with local families with a child living with a disability

• Reaching out to other people online through Pain Concern’s HealthUnlocked community or on Facebook.

Family therapists can help you to find ways of teaming up on your child’s pain together. To find therapists specialising in chronic illness visit www.aft.org.uk.

More informationVisit www.painconcern.org.uk/families for links to more resources and to listen to podcasts on children’s pain and the needs of family and carers.

Pain Concern would like to thank the young people, parents and healthcare professionals who helped us in producing this information.

July 2016. To be reviewed March 2019. This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

‘I don’t like my siblings to see me at my worst but at the same time I need them there because I can’t cope by myself.’

(Young person)

Charity No. SC 023559

Supported by the Scottish Government and the Stafford Trust.

‘You may feel like you are hitting your head against a brick wall but keep fighting. Determination!’

(Parent)

What is chronic pain?Chronic pain is pain that has lasted for more than three months or pain that has lasted beyond the time the body would usually heal or recover. Chronic pain can develop after an illness or injury or for no obvious reason. Chronic pain is caused by changes to the nervous system which mean that the brain produces pain even when there is no harm to the body.

How will pain affect my child?Chronic pain can affect your child’s emotional wellbeing and cause difficulties for them in school and their other activities. These impacts can be reduced if their pain is well managed. Each child or young person will have a different experience depending on their age, personality and other factors as well as the treatment and support they receive.

This leaflet is for parents of children and young people with chronic pain. We ll look at some of the challenges and how you can face them with tips from parents, healthcare professionals and young people.

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‘I said “let’s try everything and see what works, it might not work for you, but maybe it will.”’

(Parent)

What can I do as a parent or guardian?Parents of a child or young person who has chronic pain often feel stressed, powerless and overwhelmed at times. However, there are things you can do to help your child. Here are some tips from parents and healthcare professionals to help you.

‘Even with school… they weren’t understanding what was going on. Then the pain nurse swept in there. Afterwards it was as if we had gone back to a different place.’

(Parent)

Appointments and treatment

Visits to the GP and to hospital clinics can be stressful and difficult for you and your child. You may feel you have to struggle for your child’s pain to be adequately treated and communication can be a problem.

Tips1. Tell the healthcare professionals about

the pain and its impact on your child’s life. Be persistent!

2. Ensure your child understands about their pain and their treatment. You and their healthcare professionals can help explain this.

3. Support and encourage your child to stick to the treatment plan.

4. Support your child to be involved in decisions about their care. This is especially important as they get older.

5. Be realistic about pain relief – 100% pain free is unlikely.

School

Keeping up with school work while in pain can be a challenge. Also, teachers and classmates may not really understand chronic pain and the impact it can have. Some children and young people can experience bullying because of their chronic pain.

Tips1. Ask for a nurse to visit your child’s school to inform

staff and classmates about pain.2. Arrange for adaptations to help your child get the

most out of school. These might include:• permission to leave lessons early when

necessary• permission to use lifts on the school site• cushions and specially adapted chairs and desks• a locker for their books so they have less to

carry around• using an iPad/adapted laptop rather than pen

and paper • a ‘buddy’ system with other classmates to help

them catch up with their work.